BRAVING EPILEPSY'S STORM

By Kurt Eichenwald; Kurt Eichenwald is on the staff of The New York Times.

Published: January 11, 1987

I WITNESSED AN EPILEPTIC seizure for the first time in 1979, when I was 18. In the center of my college dining hall, a young man who worked in the kitchen had collapsed in a convulsion. Four students quickly piled on top of him. His arms and legs jerked violently and, in the process of trying to hold him down, the students seemed to be smothering him. The young man's face, twisted and red, made him appear to be in great pain and, somehow, inhuman. Yet I could see myself in his place - I had just found out that I had epilepsy.

I did not want to say anything, but I thought the four students, in their panic, might kill the young man. So I told the largest of them, who by then had a headlock on the kitchen worker, to let go. The student brushed off my concern and seemed irritated that I would bother him at such a time. I paused, then repeated my statement in louder tones.

The student was angry. ''Look, kid,'' he said, ''I'm a pre-med. I know what I'm doing. What makes you think you know so much?''

I opened my mouth, but no words came. Instead, I walked to a corner and leaned against the wall. As the young man's convulsions grew more violent, I whispered an apology to him and began to cry.

Just four weeks before, back home in Dallas, a neurologist had diagnosed my epilepsy. The doctor warned me - and so did members of my family soon afterward - that if I did not keep my epilepsy a secret, people would fear me and I would be subject to discrimination. Even now, seven years after that scene in the dining hall, it is difficult for me to say that I have epilepsy. Back then, it was impossible. In the years since, I have had hundreds of various types of seizures. I have experienced the mental, physical and emotional side effects caused by changes in the anticonvulsant drugs I take each day. Yet, for the first two years, I refused to learn about epilepsy. My fears of being found out were my real concern.

But from the beginning, I kept a sporadic record of the impact epilepsy had on my life. I wrote notes to myself and eventually made tape recordings, expressing feelings I thought no one else could understand. Later, I asked my family and friends to record their own feelings about dealing with someone with epilepsy, promising not to listen to the tapes for years. I heard the tapes and read all of the notes for the first time in preparation for this article.

My note-taking began the evening after the kitchen worker's seizure. In my room, I took out a piece of paper and wrote: ''Look, kid, I'm a pre-med, I know what I'm doing.''

EPILEPSY IS A CONDITION ENCOMPASSING about 20 different types of seizures, uncontrolled bursts of electrical energy in the brain. Convulsions, while among the most dramatic, are only one type of seizure.

According to the Epilepsy Foundation of America, there are more than two million Americans with epilepsy. Half have what I have, idiopathic epilepsy, meaning there is no known cause for the seizures. Of the two million, partly because of misunderstanding about the symptoms, about three-quarters of a million go undiagnosed or untreated.

By the time I arrived for my freshman year at Swarthmore College in 1979, I had already had many seizures, although my family, friends and I did not know it.

''You always had these staring spells, but it never worried me,'' Mari Cossaboom, a longtime friend, recalled. ''Everyone always said they were happening to you because you were tired.''

My staring spells - periods of a few seconds of mental absence -had been going on for as long as I could remember. Although I mentioned them to my doctor and my parents occasionally, the events did not seem significant.

Then, in my first semester at college, I was horsing around in the dorm with my roommates, and I fell, hitting my head against a chair. I had a concussion. No one to this day knows if the concussion affected my seizures, but the staring spells soon increased in frequency and severity. I learned they were different from other people's passing moments of distraction.

I remember once, in the dining hall, suddenly realizing everyone was looking at me. My lap was wet. I thought someone had thrown something at me. In fact, I had begun to stare while holding a glass of Coca-Cola in my hand. It had fallen between my legs and shattered.

I do not remember my first major seizure, which followed soon after. Mostly, I remember my own stunned silence. My memory of the visit to my first neurologist, in Dallas that Thanksgiving, is sketchy, although, sitting in a hospital hallway waiting to have my first CAT scan, I recall thinking that I might have a brain tumor and could die.

After the scan, an electroencephalogram and other tests were over, my neurologist told me that I had epilepsy. I was overjoyed. I did not completely understand the meaning of the diagnosis, but I knew I was not dying.

The doctor gave me several warnings: Never tell anyone unless necessary, because I might be ostracized. Call it ''seizure disorder,'' not epilepsy, because fewer people would be frightened. Try to choose a profession as free from stress as possible.

For a long time, I followed his advice, afraid that if the truth were known, I would lose my friends and never get a job.

I was given a prescription of Tegretol, an anticonvulsant, which I believed would stop the seizures almost immediately. I was wrong.

''So many people come in and think seizure control is easy,'' Steven Linder, a neurologist in Dallas who later witnessed one of my convulsions, said to me recently. ''Seizures often aren't controlled on the first try, or the side effects are too severe. So we have to adjust the medication or eventually try another.''

That Thanksgiving vacation, I started adjusting to my new restrictions: I could not drive until the seizures were controlled, I could not drink alcohol and I had to stay rested.

I first learned of the difficulty epilepsy posed for my relatives in a conversation with my father. When I mentioned my concern that my epilepsy was not controlled, he tersely replied that I had a seizure disorder, not epilepsy. When I said the words meant the same thing and he refused to listen, I realized that he did not accept my condition.

My father is a pediatrician, but with his own family, his reactions were more human than scientific. ''I went through a fairly long period of denial,'' he would say later. ''I kept thinking this was a passing sort of a thing, perhaps because you'd taken a fall. I thought it would just heal and go away. Then when it didn't, I tried to put it out of my mind.''

At the time, I could not understand my father's reaction. Much later, however, I realized it was the same as my own. Over the next two years I sometimes ignored the limitations on my life and sometimes did not talk to my doctor. I also asked the doctor to say nothing to my parents. I knew my condition deeply troubled my family and that made me feel guilty. Unlike the other feelings that accompanied my condition, guilt was one I could control. I stopped talking about my epilepsy.

WHEN I RETURNED TO SWARTHMORE, I told my roommates about the diagnosis and emphasized the importance of secrecy. Carl Moor and Franz Paasche took it in stride. For the next few years, they would learn to cope with my deteriorating health. At night, when the seizures most often occurred, I stayed in my room, hiding my condition. My roommates understood. ''It was tremendously important for you,'' Franz said later, ''to see that those of us who knew still loved you and that you weren't going to become a pariah.''

The seizures always felt the same way, and Carl and Franz told me of my consistent behavior. As my brain builds towards a convulsion, I slow down, mentally and physically. My speech slurs and my syntax inverts. My face gets pale and my eyes dilate. I become difficult to engage in conversation.

I experience what is called an ''aura'' as random brain cells start to fire. I feel a sense of separation. My head throbs, and I see a flash of lights. Even today, I am not sure of the order of these feelings or the amount of time separating them.

As the electrical firestorm sweeps across my brain, I lose consciousness and fall to the ground. The muscles in my body tighten up and my jaw clenches, the teeth possibly biting and bloodying my lips, tongue or cheek. My body jerks for a period, usually for less than a minute. During that time, I often get excessive amounts of saliva in my mouth, creating a froth. My breathing becomes irregular, sometimes even stopping. I also can become incontinent.

The convulsion ends, and I fall into a deep, though brief, sleep. As I wake up, another seizure can be triggered, starting the process again.

While unconscious, I do not respond to pain, such as the injection of needles. I have awakened half-frozen in a snowdrift but unaware, until my waking, of the cold.

When fully awake, I am very confused and panicked. Often, it takes time for me to realize a seizure has occurred. I am unsure where I am, who is with me or even what day it is. My speech is broken, and I stutter horribly, so that I am unable to ask questions except of the most patient observers.

CARL AND FRANZ developed a routine that always reassured me when I woke up. They would identify themselves, tell me I had had a seizure, where I was, the time and, if they knew, what I was doing before it began. Carl would make jokes to lighten the event, such as reciting dialogue from the scene in ''The Wizard of Oz'' where Dorothy wakes up in Kansas. The humor and the consistency let me know I was safe. My fears calmed, I would fall asleep for anywhere between 15 and 23 hours.

Over time, my roommates won my complete trust. While ty y occasionally made mistakes, they were always calm when I awoke. They never treated me with pity; my seizures were treated with an attentive disregard. We were normal friends who had fights along with fun, petty hatreds along with love.

That was enormously important in helping me believe I could live in the world with epilepsy without excuses. Each time I began to get an emotional foothold, however, a seizure would send me back into despair.

After each convulsion, I called my doctor in Dallas, hoping to learn what had gone wrong. In late April of 1980, he added another anticonvulsant, Depakene, to my daily drug regimen. Weeks later, my seizure control still had not improved, but I had no thought of changing doctors. I still saw him as my only chance.

''If people are not happy with their seizure control and have not been re-evaluated for a couple of years,'' William N. McLin, executive vice president of the Epilepsy Foundation, said in a recent interview, ''our advice is run, do not walk, to a new doctor.''

B ECAUSE OF MY trust in my roommates, I began to go out at night with them, increasing the likelihood of a public seizure. My hopes that I could keep my secret ended one morning in the dining hall, when two acquaintances were talking about a rock concert that had taken place the previous night. One complained that the fans were having ''epileptic seizures.''

''They couldn't be,'' the second student said. ''Kurt wasn't there.''

Embarrassed and ashamed, I stared down at my breakfast. His comment, while not malicious, stunned me. I had lost control of my secret.

Because of my expanded freedom, though, I met Julia Cutler, a junior, and soon faced a new problem - explaining my seizures to a girlfriend. It took me days to overcome my fear of rejection. Finally, I realized that if I did not tell her, my symptoms eventually would.

One night, sitting on a curb with Julia, staring at my knees as I spoke, I rambled through an explanation of my condition. She was compassionate and wanted to know what she should do if I had a seizure. Some of what I told her, I later learned, is part of the first aid recommended by the Epilepsy Foundation to anyone who witnesses a seizure.

The first thing to remember is to stay calm and reassure others. Clear away hard objects and loosen neckties. Then, put something soft, such as a jacket, under the head. Turn the person on his side to keep the airway open. Do not hold the person down. And do not worry about tongue swallowing.

The myth that people with epilepsy swallow their tongues is very injurious. When I had seizures without my roommates present, I would often wake up with my gums bleeding, my teeth hurting or my jaw aching. Often, well-intentioned people, believing I would choke on my tongue, tried to force open my clenched jaw to put in a hard object. My teeth would then crush against it. One person I know of had his mouth pried open with a bottle opener; several teeth were broken.

An ambulance is not necessary unless the seizure lasts for longer than 10 minutes, or unless another begins soon after the first, or unless the person cannot be awakened.

After the person wakes up, someone should calmly describe what happened and, if the person is ready, help him to leave or, if he wants to go to sleep, ask him if there is anyone to call who can get him home.

In the months that followed this conversation, as I began to talk about my fears, I recognized the mistakes I had made. I told my parents that I was very sick, that I had kept them in the dark to protect myself. With their help, I arranged to see a new neurologist near the school in March 1981. He said I had complex-partial seizures and generalized seizures but that my prior treatment had been insufficient. He increased my dosage and told me to call after every convulsion.

After my third call, he told me to increase my dosage again and continued to increase the drugs until late April, by which time I was taking 11 pills a day.

I began to stagger slightly and developed continual nausea coupled with intense heartburn. I thought I had the flu. Most confusing for me, my convulsions increased until they occurred every other day.

When my hair began to come out in my hands, I knew the medicine was making me sick. My doctor, however, attributed my symptoms to stress.

In June, dazed by seizures and 35 pounds lighter than just four months before, I traveled with my roommate Carl to his home in Chicago. A doctor there, in the course of a routine blood test, found that the drugs I had been given had reached a toxic level and were killing me. They were suppressing bone-marrow production and giving me the symptoms of leukemia. The medication was stopped, and phenobarbital, another anticonvulsant, was substituted.

Carl had invited me to Chicago that summer because he knew that, unable to drive, I often got stranded in Dallas. Chicago had a subway system, and I could get around. I got a job as an intern for a political action group.

My blood tests returned to normal, but my seizures, though milder, often occurred more than once a day and were more varied because of the rapid change of medicine. I began to fall to the ground with little warning. I fell against a pot of boiling water. I fell down staircases and in the middle of a busy street.

I had decided by then that nothing could be done for me, that my seizures simply could not be controlled. I had no choice but to live my life always expecting another seizure.

My parents begged me to return home, but I told them that, with a doctor in Chicago, leaving my job for Dallas would not make any difference. Unsure of what to do, my mother tried to understand the nonmedical aspects of epilepsy. She went to the Epilepsy Foundation in Dallas and told a counselor my story. She asked if she and my father should take me home despite a threat I had made to run away if they tried. She was told, she said on a tape, that ''Kurt must be allowed to come to terms with this in his best way, and that he must be allowed to make his own decisions. Otherwise, he might give up.'' Toward the end of the summer, with my work at the office suffering badly, I reluctantly went home to see a new neurologist my mother had found. I had grown tired of doctors and did not want them to hurt me anymore. I was convinced I would not live to see my college graduation. I would die from an accident, a stroke or by my own hand.

When I met Allan Naarden, the doctor whose patience and wisdom would save my life, I thought he was odd. He was cheerful, not aloof like the others. He quoted Greek mythology and Henry James as often as medical textbooks. He explained to me why he thought we should try a particular treatment. No doctor had done that before. He was against hiding, saying it encouraged ignorance in the people around me. He also said that he could not guarantee I would ever get complete control, but I could get better control. I cried, relieved to have found a doctor who was honest about the limits of medical knowledge.

After tests, Dr. Naarden prescribed Dilantin, another anticonvulsant. My sudden ''drop attacks'' stopped. Soon, with convulsions occurring only twice a month, I finally believed that my life was coming together.

I N SEPTEMBER, I RE-turned to Swarthmore for my junior year. I was happy, even though the medication gave me severe drowsiness and slightly changed my personality, making me more dour than I usually am. I began to tell friends about my condition, easing the burden on Carl and Franz. For the first time in two years, I walked the campus by myself. Over the next weeks, I had two seizures outside and campus security and the health center, not my roommates, dealt with them.

In the first week of November, the administration of Swarthmore dismissed me from school because of my health. My fears from years earlier were realized. After my first eight weeks of honesty, control of my life had been taken away from me.

My parents and Dr. Naarden had been told of the pending dismissal. Dr. Naarden wrote to the dean advising against it. ''Educational opportunities lost in youth cannot be made up for later in life,'' he wrote. ''It is extremely important for students to continue their education even if seizure control is not perfect.'' My mother flew east to the school to meet with me and the college authorities.

''Kurt began to come apart,'' she said later. ''He cried and he hollered and he begged and he pleaded. He said, 'Don't do this, don't do this to me now. If you send me away from here, I will not come back. I will not be able to make it.' ''

The administration's misunderstanding of epilepsy contributed to my dismissal. ''At Swarthmore, we had put epilepsy in a closet,'' Janet Smith Dickerson, dean of the college, recently recalled. ''People were frightened, because no one knew what was causing the seizures. But you had already reached a turning point. We didn't understand enough to recognize that.'' After I arrived back home, my dismissal triggered an intense rage. I screamed at my family, my friends, sometimes at myself on my tape recordings. The explosion of anger was so strong that all of us worried that I was losing my sanity.

My father changed. When it appeared that I would not be readmitted to Swarthmore, his own anger overtook him. Finally accepting my condition, he became enraged that anyone would deny me a normal life.

By December, I learned that I could not be dismissed from school because of my health under section 504 of the Rehabilitation Act of 1973, which provides rights to the handicapped. With advice from the Government's Health and Human Services, my family and I contacted school officials and lawyers to get me back to school.

At the end of the first week of the second semester of my junior year, without going to court, I was readmitted to Swarthmore and continued my studies as a political science major.

The school was beginning to understand my condition. ''We learned, as a school, that epilepsy is a handicap,'' Ms. Dickerson said. ''But certainly one that is manageable and not one that should be regarded as a significantly limiting disability.''

In my final years at school, I did not go back into hiding, but I never stopped being cautious. In June of 1983, I graduated with distinction.

I found work as a political speechwriter and a writer with CBS News before joining the staff of this newspaper. I now live in New York, where I can function without a car. The man and wife from whom I rent my apartment know all about my condition. I carry an emergency card with the phone numbers of people who can help. My epilepsy is under good control, although I still sporadically have convulsions. I have had to struggle with various problems, such as the difficulty of obtaining health insurance and sometimes of working with colleagues who are unsure, or wary of me. My doctor tries for better control, still making occasional changes in my medication dosage, including one while I worked on this article.

I still get angry that people with epilepsy feel driven to hide their condition, but I understand why. I know now that there is discrimination and fear but have learned that the best way to address (Continued on Page 36) that is through educating people and, if necessary, turning to the law.

I now believe what Carl once said to me: ''If everybody in the world knew now to deal with epilepsy, if everybody in the world were not mystified by a seizure, if everybody in the world were willing to help out when they see a stranger have a seizure, then the life of people with epilepsy would be infinitely easier. They would be able to go everywhere and do just about everything and not worry.''

I WITNESSED A SEI-zure for the second time when I was 22. I was in Washington for my first job interview after college, and, while answering a question, heard a panicked voice cry out, ''Does anybody know anything about seizures?''

I stopped in mid-sentence and yelled, ''I do.''

I was taken outside where an elderly man was having a convulsion in the street. One passerby was pinning the man's shoulders to the ground. When I told him to let go, he did. I leaned down and pulled off my coat to put under the man's head so that he would not hit himself on the sidewalk.

As I checked the man's pockets for signs that he had epilepsy - a bottle of medicine or a card - I noticed the look of fear on the faces of the people surrounding him, a look I knew. And I was surprised that something so minor was so shocking.

Someone came out of a building with a spoon to put in the man's mouth. I stopped him and explained why it was unnecessary. The tension of the crowd eased.

The man woke up and was very disoriented. I explained what was going on, and he seemed calm. Two people helped me get him back to the office I had left, where he sat and gradually became more coherent.

Soon he said he wanted to go home. I got up and went with him to make sure he was ready to leave.

Walking down the street on a sunny day in Washington, I told the man not to feel embarrassed, although I understood how he felt, because I had the same condition.

When we reached the corner, he took my hand and squeezed it. ''We're both gonna be all right,'' he said.

I watched him slowly cross the street, and, for the first time, I believed that was true.